PPI Feedback Loop
15 Oct 2018

PPI Feedback Loop

Published Date: 15 Oct 2018

PPI is now established and required within health research. However, PPI representatives contributing to research studies report rarely hearing anything about their comments even whether received, useful, implemented or having any impact. PPI contributors in the East of England (EoE) proposed this research proposal and the resulting study sought to establish the variation, types, importance of, and satisfaction with researchers providing feedback. The study’s first year was an explanatory mixed methods study using on-line survey, interviews and audits (see published paper http://dx.doi.org/10.1111/hex.12684). Its second year implemented and evaluated co-designed PPI tools. 

The research project created regional and national collaboration opportunities by involving six PPI groups* across EoE, the NIHR Research Design Service (RDS) and INVOLVE. (*CPFT, CUH at Addenbrookes Hospital, NIHR RDS EoE, PIRg Hertfordshire, PPIRes Norfolk and Suffolk, and INsPIRE Cambridgeshire and Bedfordshire).

Three of the six groups still use the PPI Feedback tools and processes. PPI feedback has improved as a result of their involvement in the project, some individuals and PPI groups have changed ways they now feedback to PPI contributors. The research has also advanced understanding of the various definitions of PPI Feedback and barriers.

The research team co-designed PPI Feedback Guidance (launched 9.3.18) now promoted nationally, regionally and locally, ensuring that besides the PPI Feedback tools being used in the East of England, other organisations (including NHS and other CLAHRCs) have started to use the tools and signposting it on their websites.

The PPI Feedback Tools were trialled and implemented within the organisations of the six PPI Groups.

Contribution of CLAHRC East of England

CLAHRC EoE funded this research and the core team have supported dissemination of the study and its findings, through inclusion in presentations and printing a CLAHRC BITE for distribution at events.

What happened next?

The PPI Feedback Tools were trialled and implemented within the organisations of the six PPI Groups.

The National Public Involvement Standards (launched 20.3.18) recognise this research and the Feedback Guidance produced; recommending it as a key resource for ‘Standard 4: Communications’ (see supporting resources document). It is also recommended by CLAHRC Oxford and PeterBates.org.  

The Guidance and Tools have been adapted and used by The University of Kent, CLAHRC West Midlands; and PenCLAHRC.

National and regional dissemination includes: INVOLVE 2017; AMRC/ABPI Patient First Conference; CLAHRC NWL/Imperial PPI in Research Forum; and sharing with partners in the EoE NIHR PI collaborative group.